Resignation

[heapsreal]

@digital dog
Was it clonazapam/klonopin the benzo which mucked you up??

Drs just don't know how to treat drug tolerance other than increasing the dose, which helps for the short term but when time comes to stop its a big drop off the cliff going from a large dose to zero .

I think if hormones have been a mess for awhile it can take along time with small doses to sort it out, possibly even dosing every second or third day.

Hope u someday sort it out.

I sort of know what your going through as i remember the cfs insomnia nights and napping for 5mins only to be woken by screaming kids in the middle of the night, as i look over at the alarm clock and have 3hrs before i have to get ready for work. Aarrgghh.

Another thought, if lamactil helped, look into lyrica. It can help put the fire out in those neurons going crazy in your head and help get some sleep.

Just ideas but just ignore if you've tried them or over looking into it.

It would be nice to go to hospital and be knocked out for a few days??

 

[heapsreal]

Let me phrase this post another way:

If someone told you that you cannot improve through any intervention how would that sit with you?

How do you think you would cope with this realisation?

Would any of you believe that your life was too painful to continue?

Would you still cling onto time being the greatest healer of all?

My opinion if there were no treatments to improve cfsme , i would be persuing symptomatic treatment and comfort like pain relief and sleep treatments . Have the opportunity to be bombed out to give us some respite from the chronic headaches, fog and body pains . Maybe look into medicinal pot or something . Really not to different to terminal cancer patients .

The hard part is finding a dr to treat ypu pallitively for cfsme ? ?? And willing to try many symptomatic treatments .

 

[digital dog]

Lyrics wasn't good for me.

What about kutapressin which is available by another name now? Have you tried that Heapsreal?

 

[heapsreal]

Lyrics wasn't good for me.

What about kutapressin which is available by another name now? Have you tried that Heapsreal?

No too expensive for me. My best treatments were famvir and valcyte. Antibiotics were doxycycline , augmentin and bactrim. Pregnenolone has helped raise my cortisol and helped with energy and used hydrocortisone for stress dosing in low doses like 5 to 10mg a day when feeling very run down.

 

[digital dog]

Famvil and Valcyte, which doc prescribed these to you?
It seems a lot of people improve with these.

 

[Timaca]

digital dog~ I am sorry for what you are going through. I will offer one piece of advice that helped me and a friend of mine (who also has CFS) with sleep. Cut out foods high in histamine. It won't cost you anything (but dietary changes) and it may help you a lot. It did for both of us.

In general, this means no probiotics or fermented foods (kefir, yogurt, saurkraut etc), no cheese, spinach, tomatoes, avocados, pumpkin, soy or soy beans, red beans. If you eat animal protein it has to be super fresh, no left overs (I can't eat animal protein except very fresh fish). It may take 3 weeks for you to notice a difference, but you might know in less than one week.

Check out the New Histamine Food List and the Low Histamine Food List on my blog for more info. (Scroll down to see them). If I eat foods high in histamine, one of the first things that happens to me is I don't sleep well and am agitated.

All the best,

 

[Raines]

Let me phrase this post another way:

If someone told you that you cannot improve through any intervention how would that sit with you?

How do you think you would cope with this realisation?

Would any of you believe that your life was too painful to continue?

Would you still cling onto time being the greatest healer of all?

I feel for you and understand digital dog.

If I knew for certain my illness would be forever as it is now, then no I would not want to continue to live.

Hope for me comes and goes, and I often wonder why I continue on. I have thought about suicide often. But suicide is not an answer. I do not want to die. I want to live. I just don't want to live my life as it is now.

For the first time in a long time I have hope. Hope for the future, hope that things are changing for us, hope in the research, hope for medications to really help us not just mask symptoms. Hope that one day I will be at a level where I would be ok knowing that was as good as it was ever going to get. Hope that my sister and brother-in-law might decide to have a baby, hope that the small things I do to feel less lonely will work. Hope that 2016 will be a better year for me.

Hope is however a double edged sword. And we have all lived through the crushing disappointment of hope shattered.

You have a husband and child, you are lucky, not all of us got that. I'm not saying that to make you feel guilty I am just pointing out that we all have good things in our life, things others would have liked. I have a family who support me and do their best to understand, I know some people don't have that, and it makes me lucky.

I probably haven't explained myself well, and so I apologise if this has come across badly.

 

[digital dog]

Thank you Raines, that is a lovely post. Thank you Timaca too.

I do have hope. It is my daughter and hope that keeps me here. I have hope in Rituximab; especially as a lot of family members have autoimmune conditions and I have hashimotos. I will move heaven and earth to try rituximab and if I had the money to be treated with it now I would do all I can to receive it.

I just wish they'd get a move on. I can't imagine we'll be able to try it for at least five years.

Time does not fly when you are not having fun!

 

[Tammy]

..(Infinity).......................been where you are many times................ sending my support,prayers and infinite hugs.

 

[heapsreal]

Famvil and Valcyte, which doc prescribed these to you?
It seems a lot of people improve with these.

Depends what viral infections you may have active. My gp prescribes these antivirals and he sees many cfsers here in brisbane.

You are in Melbourne ?

 

[Snow Leopard]

It definitely gets hard to want to continue sometimes, especially when you have a relapse (or are severely ill!).

It sounds funny to say it, but... I want to live to see someone win a Nobel Prize in Medicine for discovering the cause of ME!

 

[Woolie]

I cuddle and play gently with my dog. She is the best therapist ever and worth her weight in Prozac. All 40kg of her!

Hey, @Invisible Woman, me too! My 46kg dog is such a joy in my life!

 

[Woolie]

Suicide is never far from my mind (am I allowed to say this?)

I appreciate what @Invisible Woman is saying. I've had similar thoughts before - 20 odd years ago - and I don't think they're always "irrational". At the time, I was completely bedbound and very ill, it seemed perfectly rational to weigh up whether the benefits were worth the suffering. I thought about how long I would wait to see any improvement before deciding on "action". At the time, it felt sort of empowering, because I had no control over anything else in my life. This felt like having a "plan".

But luckily I was too ill to act on the plan, and a good thing too, because there have been a lot of things in my life since then that I'm glad I didn't miss.

 

[PatJ]

Has anyone got to the point where you can accept your condition and limitations?

I accept the state of my health at the moment. I've been ill with CFS for more than a decade. My condition changes over time so I can't just accept it and be done with it.

I'm currently bedbound much of the day but my mind is working much better than it did a few years ago (thanks mostly to B12, Lecithin, and LDN). If I had given up before trying any of those things then I would I be so much worse that I wouldn't have the health to use this forum.

Where you are no longer searching for the next doctor, cure or treatment?

I've given up on doctors for the moment. I don't think in terms of a cure, but I do look for anything that will lighten the burden, even a little bit. I keep trying affordable supplements because a few have enough benefit to keep taking them. My pile of "makes me worse" supplements is far larger than "helps a little", but the second pile makes life more bearable.

When I try something new there is a little glimmer of hope that maybe it will be one of the "helps a little" supplements. Little hope leads to little disappointment. Big hope leads to big disappointment.

I think it is time for me to accept the reality of my life.

You can accept your health at the moment but also accept that it will continue to change. Hopefully for the better.

If someone told you that you cannot improve through any intervention how would that sit with you?

I would ignore them. Just like I ignore the people who recommend exercise for CFS.

What has helped improve my mood a little: MethylB12, Lithium Orotate. A simple sleep aid that has helped me is to raise the head of my bed by 6". It helps noticeably. I also take magnesium, time-release melatonin, Enzymatic therapy sleep formula, and LDN. Each helps my sleep improve by a small but worthwhile amount. Sleep is frequently interrupted, non-refreshing, and nothing like normal, but it's better than it would be otherwise.

"Fall down 7 times. Stand up 8."
–Chinese Proverb

Don't give up.

 

[PatJ]

On particularly rough days when I'm sure I can't possibly endure,
I remind myself that my track record for getting through
bad days so far is 100%. I can make it through another one.

―Anonymous

 

[RYO]

I am in the same boat as you. I spent half my life getting through medical training and 10 years building a practice. Now I am barely able to work. What a waste... It just pisses me off!!! It is a blessing though that some my patients understand my suffering when my family and friends just can't relate. I still have hope. One of my patients recently cured of Hep C. Undetectable viral load with 12 weeks of Harvoni. We just need someone with resources to champion our cause. It may take another 10-20 years. Here's to perseverance...

 

[moki]

The only thing that kept me going for a very dark period of time in my life was my children. I knew that they would rather have the miserable, sad, tired, hopeless mother than a dead one. They were preteens then and I did my best (which was tons better than I could do now).

When I would think about suicide and then my children, all I could think about was how much I loved them. Sometimes loving your children involves sacrificing what (you may think) is best for you. I guarantee you that killing yourself is not a loving act to your child.

Your pain is jumping off the computer screen and is palpable just in reading it. This is no lecture. I understand.

 

[Octopusbeak]

I feel completely resigned to the condition after five or six years. In the first four I was waiting to get better, planning my life around the way I used to be. After a few particularly bad months I realized it was time to focus on living with the condition instead of fighting it.

It feels impossible at times, difficult beyond belief to live the life I do. When that happens, I reduce my mental state from the larger picture: worries, fears, strong emotions, to a more immediate state: the feeling of breathing, the pillow on my face, the chorus of sounds around me, the weight of myself and surrounding objects. When I feel terrible, I might stay in this state for most of the day. When I feel better, I only be in that state a few times a day.

 

[slysaint]

I gave up looking for a cure after 5/6 years and concentrated on management. The gp who gave me the diagnosis of ME said "in 10 years time it'll all be like a bad dream'. 10 years seemed like a lifetime. Year 10 came and went, and although I'd made some improvement I lost all hope of ever getting my life back.
I'm single, with no kids; my dog died 6 months after I fell ill. I've had no support from my family (haven't spoken to any of them for 6 years now since my mum died). Every day I'm just killing time.
Last year I was very sick with a secondary illness and didn't want to go on anymore. I have a couple of very good friends who've helped pull me through, but it is hard and I'm only just nearly back to square one.
But every now and then, something small will make me laugh or feel good about myself, that I still have something to give, and its these moments that keep me going.
Most days I visit a lovely lady who's just turned 97. She has been through almost every illness you can name and had umpteen operations, but she won't give up.
I don't think I am so resilient , but what's the alternative?
I wish I were a hedgehog and could hibernate.

 

[digital dog]

I'm sorry you are struggling Slysaint. All we can do is hope that one day, in the not so distant future, people understand this dreadful illness and we get the help and respect we deserve.
As soon as Rituximab comes into the picture the media will be flooded with stories and science.
Until then, we just kill time.